21 Day Fast Update

Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is- his good, pleasing and perfect will. Romans 12:2

It's been nearly two weeks since I made the decision to be more aware of my thought patterns and to spend more time with God whenever I have the instinct to think something that coud have a negative impact on my feelings or my family and their feelings. In my last blog post, I referenced a situation that my family is facing right now that could be perceived as a negative life event, but I have chosen to think of it in a different way during this fasting period, and hopefully even after that.

Let's just say I've been spending much more time praying than I was in the past, and I can verify that there really is so much power in prayer! Typically, my prayer time occurs in the car as it is one of the few places that I spend time completely alone. Sometimes I pray in the shower or just before going to sleep at night, but I'd really like to dedicate time each day that is specifically for God. If I'm praying while I'm driving or bathing, I am sharing my time with God with other tasks. Like many other women, I multi-task everyday to accomplish all that needs to get done, but God deserves much more than half of my attention and focus, doesn't He? Over the last 11 days, I have prayed at times and in places when I might not normally, and it has been rejuvenating for me.

While I think I'm on the right track, I haven't reached my final destination just yet. I am a work in progress and I'm trying to stay focused on fulfilling God's purpose and His will for me. This fast couldn't have come at a better time. I'm looking forward to the final 10 days of this fast, and all of the time that I will spend strengthening my relationships with God, my husband and my children.

New Year, New Me?

It seems like it's been a while since I've really written out what's on my mind. The month of December was so hectic, as I know it is for countless others. It really has been a bittersweet time for us. We've received some awesome news this month as well as some awful news. We had a week just before Christmas that was such a roller coaster of emotions.

We attended the STAR program's memorial service for a second year. It was so nice to dedicate that time to remembering our angel. I met a fellow STAR parent who has chosen to make a quilt for all of the STAR babies. I was excited to be able to share the five quilt squares that were designed by my family members in memory of Lily for her to add to the quilt. I will post some pictures of our squares soon. They are amazing!

Prior to this service, we had been going through the motions of the typical Christmas preparation and activities. We were decorating the house, shopping, wrapping, seeing Santa, checking out the Christmas lights, going to Christmas parades, getting involved with the Christmas drama at our church, and planning a little Christmas party at our house. We were excited to experience our first Christmas with Ainsley, who is now 6 months old. Our son, Owen, who is 3, was so much fun this year. He embraced the holidays wholeheartedly, and it was such a joy to watch. It was a little difficult to balance my feelings this year as I was so happy to see my two little ones experience the magic of the season, all the while wishing that Lily could be part of the fun too. This would have been her second Christmas. However, the memorial service was a great way to block off a special period of time to celebrate and remember her. I look forward to the year that we choose to take Owen and Ainsley to this service to remember her as a family.

The morning after the memorial service, as I was still a little emotionally drained from the night before, we received some bad news that has negatively impacted our family. We are still digesting this news and learning how to cope with it. Obviously, it is never a good time to receive bad news, but two weeks before Christmas really put a damper on my holiday spirit this year.

Later that same week, we took our 6 month old, Ainsley, to the cardiologist for a follow up appointment to check on the status of the hole in her heart. We are beyond excited to report that the hole is closing!!! While it is still slightly visible, it is significantly smaller, and is now the size of a pin hole. We were told that surgery is definitely not indicated given this progress!! I couldn't have asked for better news at a better time. Just weeks before Christmas, I finally felt at peace about this issue that has been seemingly unresolved for the last 6 months.

Upon learning about her condition in June, I naturally worried about my daughter's health, and the effects that her condition could have on her teeny little body. I recognized after her last appointment that I could not control this issue and that in order for me to be the best mommy I could be for her, I needed to turn it completely over to God. After all, He is the ultimate healer, not me. I wish that this had been my initial reaction, rather going through four months of worry, stress, and anxiety because as soon as I made this very conscious decision, a peace came over me, much like the peace that I feel when I think about Lily and the fact that I know she is okay.

Given all that is going on in our lives right now, I felt like this was one issue that I could safely check off of our list of things to worry about. So, that takes me back to our newest source of stress....I've been talking a lot to my sister, Tracy, about this issue and the wide range of feelings that I am experiencing. After much venting on my part, and attempts to boost me up on her part, she finally suggested that I pray about it. Such simple advice really. Any of you who read this blog recognize that I am a Christian and that my faith is very important to me, so why didn't I think of this?! I know how much I have relied on God throughout my journey with Lily, and I realize that He is the One who has been my constant source of support and encouragement. It is only because of Him that I was not a complete wreck every single day for the months immediately following Lily's death. He allowed me to think more positively and to be hopeful during those times when I could have felt hopeless. I realized recently how much He has helped me to get through the waiting time that was so necessary for Ainsley's little heart to heal itself. It is abundantly clear to me that He is always faithful. So, while Tracy's advice may seem quite simple, as soon as she suggested that, I was speechless. Of course, prayer is the answer! Why do I feel the need to solve this issue, or to analyze a situation that I don't have any control over? For me, it's not even so much about the bad news that we received as it is about the way that I am thinking about it and responding to it. Then I realized, why am I wasting my time with negative thoughts or negative energy? I am here to fulfill God's purpose, and the way that I was responding to my situtation was certainly not something that I think He would be proud of.

I posted some of my thoughts about New Year's resolutions last year, and the fact that you don't need to wait until a new year to make a change. Every day is a new opportunity to make changes and improvements. It just so happens, though, that the new year coincided with my immediate need for change and a new perspective. So, I am, in a sense, taking back the words that I posted just one year ago, and making a New Year's Resolution. It's a big one.

My church just started a 21 day fast yesterday, and after much thought and prayer, I have decided to fast negative thinking. I haven't shared this with anyone, and now that I've put it out there, I know I must hold myself accountable. I wouldn't necessariy describe myself as a negative person overall, but I have tendencies to focus on the potential problems given a less than ideal circumstance, and it just so happens that we have had a few of those over the last couple of years. Given our current situation (which I realize I've been extremely vague about), it will be a challenge for me to remain optimistic, but I believe that God doesn't want for me to focus on the obstacles or the challenges. If I rely on Him, all of my needs will be met. I am reminded of a restaurant manager that I worked for when I was in college waitressing at a crab house in Ocean City. Anytime someone went to him with a problem, he would respond "there are no problems, only opportunities". Fifteen years later, I am still reminding myself of this. I am making a decision to focus exclusively on the potential opportunities. I will be praying diligently for patience and the ability to control my thoughts. This is a skill that I teach others to do everyday, so it's time I practice what I preach, so to speak. Stay tuned for updates on my progress. I have a feeling this could be incredibly eye opening and life changing for me.

Merry Christmas!

Merry Christmas my sweet baby girl!! This was the second year that you celebrated Christmas with Jesus. I missed you tremendously and wished that you could have been here with me and Daddy and your brother and sister. The joy on their faces was magical as they both took in the wonder of Christmas day. I can only imagine the experience that you have every day to celebrate not only Jesus' birth, but also His everlasting life. What a gift!
Speaking of gifts, we have added four new ornaments to our tree just for you! You are such a huge part of my heart, and it just isn't Christmas to me without thinking of you. I love having these reminders of you on our Christmas tree. I often gaze at our tree and admire all of our oraments as each one seems to have some significace or special meaning, especially yours. A couple of donations were made for you this Christmas to the Trisomy Foundation, which brings me such joy! While you are on my mind and in my heart every day, you have other family and friends who love you too.
I'm thinking of you always, and remembering you a lot today. I love you Lily!

Thanksgiving

This week marked the transition from Thanksgiving to Christmas, and I was surprisingly hit with feelings of grief while we celebrated such happy occassions. Of course, I continue to think about Lily consistently, probably still on a daily basis to some degree, but this past week, she was ever-present in my thoughts, and it finally all hit me Wednesday night, the night before Thanksgiving.

We started pulling out our Christmas decorations, and we were optimistically trying to have our Christmas tree up and decorated by the time we left for Thanksgiving dinner Thursday afternoon. We were ahead of schedule, as the process of putting up the tree and untangling the lights went much smoother than in years past. I always enjoy putting the ornaments on the tree as I have so many that are special to me. Not only is Christmas a time when feelings of grief may be stirred up naturally, but since Lily died in June, December is a 6 month mark, which feels noteworthy to me. This will be our 2nd Christmas without her, and it will mark the one and a half year mark since we last saw her. We have accumulated a handful of Christmas ornaments dedicated to Lily, and I cherish each one of them.

Our hospital's STAR program has given us two glass star ornaments. We received one of them before we left the hospital following Lily's delivery in June, and the other one was given to us at the Christmas memorial service last year. A friend of ours made an ornament for Lily last year that we were able to use in our family Christams pictures last year to remember her. I smiled immediately when I saw that one, and my heart was full of gratitude and appreciation for the thought that went into that. My mom gave us an "Always Remembered" Hallmark ornament last year. My family loves Hallmark ornaments, and each member of the family receives a special ornament from my mom every year. I love that Lily could be included in that tradition. Finally, the funeral home that we used for Lily's cremation offered ornaments to the families who had lost a loved one within that year. It is a dove with a banner that reads "Lily Grace".

I strategically placed the Hallmark ornament and the two star ornaments near the top of the tree to reduce the risk of my son taking them off or breaking them. Since the handmade ornament is not breakable, it was given prime real estate, in the front and center of our tree. When I got to the dove from the funeral home, I hesitated. As I placed it closer to the top on the side of the tree, I couldn't help but think that never in a million years did I think that I would be putting an ornament from a funeral home on my Christmas tree. Ugh- did I really want to include this on our tree? I took it back off, and considered it again. Do I really want this reminder? Of a funeral home? At the risk of sounding snooty, it looks kind of cheap and like something you might imagine would come from a funeral home. Although I never would have imagined ornaments coming from funeral homes in the first place, but you get my point. It's a little weird. I decided that I did want to include it after all, and while it may seem strange to have this on our tree, it is what it is. This has been our journey, and this is our life. Funeral home and all.

While the tree decorating was in full swing Wednesday night, I kept checking my computer for news from friends of ours who are expecting their first baby, and we couldn't be happier for them!! She has been eagerly waiting for her sonogram appointment to learn the gender of their new bundle of joy, and I was anxious to hear their news. I have been really excited for her, and I don't know if I realized it, but I guess I had been a little anxious, and maybe even worried for them.

I remember being so excited to find out if Lily was the little girl that we were praying for, but I never really wondered if she would be healthy. I just assumed she was. I feared for this couple who so obviously want this child. I hate that fear comes to my mind at times like this. I wish I could just be excited and positive, but it was this same 18 week sonogram appointment for us that forever changed our world, and anytime I know of someone going to a similar appointment, I try my best to act like I'm excited about their baby's gender, but really, I'm more excited to hear that their baby is healthy. I often wonder how another couple would deal with a tragedy if they were faced with the same situation we were. I know first-hand how devastating it is to go through, and I certainly don't wish that on anyone, especially people we know and care about. It's just something I often consider. I had been praying for my friend from the time I found out about her pregnancy. I realized just how anxious I was for her when I caught myself checking my computer for about the third time. What is my problem??! Between staring at Lily's ornaments and rearranging them on my tree, and checking my friend's facebook status, I was driving myself crazy. After moving the cheap looking funeral home dove for the third time, there was finally a new post... They were expecting a "HEALTHY baby GIRL"!!!

I couldn't be happier for them!! But, then, why do I feel like I'm about to cry...My husband noticed my emotion, and for the first time in a long time, we talked about Lily with each other. It was the way she capitalized those two words in her status update that hit me the hardest.

It was good to talk about her out loud. I think about her a lot, and continue to write about her (although not everything I write makes it to the blog), but we don't often talk about her. The holidays are always a special time for our family, and may always bring up these feelings as I wish that she were here to celebrate with us.

Overall, it turned out to be a very productive evening. The tree got done. We shared our friend's joy, via facebook. Most importantly, we remembered our daughter. What a great way to celebrate the night before Thanksgiving!

What if?? (and baby Quinn turns 1!)

This date, October 28, holds very special meaning to me as this date last year was Lily's due date. Without realizing the meaning of this date, I found myself thinking a lot about her this afternoon. Periodically, I'll catch myself playing the "what if" game. You know, what if she had been a full term baby?, what if she had been born alive?, what if we could have held her for even a few moments while she was still alive?, what if she had lived hours or even days?, what if she could have survived long enough to leave the hospital to experiene some of her life at home?....Then, I'll stop those thoughts by reminding myself of the very harsh statistics about Trisomy 18 and alobar holoprosencephaly.


We know that 50% of Trisomy 18 babies who make it full term are still born. Of these 50%, just over 90%die during their first year of life. If only this was Lily's only hurdle. We also know that most babies diagnosed with alobar holoprosencephaly are still born. It is this diagnosis that would have limited her significantly. With such a severe brain defect, she would not have had the ability to walk or talk. She may not have been able to eat, and could have easily required a feeding tube. While this should put an abrupt halt to my what if thinking, I still find myself wondering.

You may remember that Lily has a cousin, Quinn, who shared her exact same due date. He was born just a few days late, and is now approaching his first birthday. I think my family was concerned about how I would handle Quinn's birth after having to say goodbye to Lily. Admittedly, I was concerned about how I would handle his arrival too and truthfully, I wondered how difficult it would be to see him through his infancy. I worried that seeing him grow, develop, and learn new things would remind me of all of the experiences that our Lily would never have. However, I have noticed the exact opposite. He may never know how much I enjoy seeing him and watching him grow and change, and while that is mostly due to his uniqueness, I admit that it is also because he is a reminder to me of my baby girl. It is because he is going through the ages and stages exactly as she would have during the same months and seasons. I realize that it may not be fair for me to compare Quinn to Lily as he is obviously special on his own. It's just that if he wasn't here, Lily may be easier for others to forget about since she is no longer with us. Quinn is now learning to walk. He is getting to the point where I can't really compare my what ifs to him anymore because I know for sure that Lily would have never been able to walk. I'm not even sure if she would have been able to sit up.

While I succeeded in making it through the first year after Lily's death, I was also anticipating emotionally getting through Quinn's first birthday. As I was shopping for his birthday gift and looking at the toys that were the most age appropriate for him, I considered that if all of my what ifs came true, Lily probably still would not have been able to play with any of these toys as she would not have had the physical or cognitive ability.

I try to make an effort to change any negative thoughts into more positive ones, so instead of rambling on about all of the scenarios that are just not applicable or realistic, I'll end this post by wondering what if Lily knew how much I think about her and miss her. Now I think that is a what if that I can be positive about!

Bless her heart

Ainsley had her follow up appointment with the pediatric cardiologist on Friday, and while we were hoping for news that the hole in her heart was smaller or even closed, we are trying to stay positive after learning that things have not changed at all. I suppose it is good news that the hole has not gotten larger or that there haven't been any further complications. Just when I catch myself feeling frustrated with all of the doctor's appointments or feeling sorry for our daughter having to endure the appointments, EKGs and the echocardiograms, I remind myself yet again that we are incredibly blessed to have her in our lives. I remind myself too that she, hopefully, will have no recollection of any of these appointments. She is just so little and so young to have this mountain to climb.

I mentioned a bible verse a couple of posts ago, and talked about my brother-in-law who used to sing "Never Let Go" in our church. My husband and I have been attending a different church for the last 2 years, and until recently, I don't remember ever singing this song there, but we have now for the last two Sundays. What an awesome reminder to me the week leading up to Ainsley's appointment that God never lets go of us, and another great reminder following he appointment that He is there through every high and every low, through the calm and through the storm. Even when the news we received was not what we wanted it to be, we know that she will be okay because God will never let go.

As I was taking my 3 year old to pre-k this morning, he started talking about heaven, completely out of the blue. Not even three minutes before he was asking if we could go for a bike ride and play baseball after he got home. Next thing I know I'm in the middle of a very interesting three year old train of thought:

Owen: "Mom, how will I get to heaven?"
Me: "When Jesus decides it is time for you to go to heaven, He will come get you"
Owen: "When?"
Me: "Jesus will decide when"
Owen: "Right now?"
Me: "No honey, not right now."
Owen: "What about Daddy?"
Me: "What do you mean what about Daddy?"
Owen: "Will he come too?"
Me: "When it is time for Daddy to go to heaven, he will go too"
Owen: "And you and Ainsley?"
Me: "Uh Huh"
Owen: "Is Mocha (our dog) in heaven?"
Me: "No honey, you just let her in before we left, remember? She's at home."
Owen: "Oh. What about that frog? Jesus came and got it and took it to heaven?"
Me: "Yes"
Owen: "If you and me and Daddy go to heaven, who will hold Ainsley?"
Before I could answer-
Owen: "And mom, I think Ainsley is too little"
Me: "Too little for what?"
Owen: "Too little to go with Jesus. So Daddy and I will go to heaven and you stay at home with Ainsely, k mom?"

He almost said that like he was excited about it or looking forward to that day, and I guess I am glad that he sees it as a positive thing. I realize that I could have used this conversation with him in so many other, possibly better ways. I could have talked more to him about Lily, his baby sister or our cat who passed away a couple of weeks ago, but I really wanted to let him take the lead on this one, and quite honestly, I didn't want to draw out the conversation any longer than necessary as we were just a few minutes away from his school and I hated to leave him on this topic. It was interesting for me to hear my son acknowledge in his own way, though, that Ainsley has her whole life ahead of her.

I am so excited to parent her through every stage and every mountain. We will continue to pray for the hole in her heart to close, but we know that God's plan and His timing are perfect. Ever since we said goodbye to Lily, I try very hard to open my mind and my heart to learn whatever it is that God wants me to. I ask Him regularly to show me His will and to give me the patience I need to see it. I know there is a reason that He has chosen to use our Ainsley's heart in this way. While we pray for healing, we will wait as patiently as possible for her next appointment in December, and my son, who has been singing "Never Let Go" with his Lightning McQueen guitar and microphone has been keeping my thoughts in check and my hopes high.

My Rainbow Baby

Although I haven't written a post for the last several weeks, Lily's blog has been heavy on my heart. If you've been following my blog, you know that our second daughter, Ainsley, officially joined our family eight weeks ago. I think I was still in the hospital following her delivery when my husband asked me if I was planning to continue this blog. As I have said numerous times, Ainsely does not replace Lily and her being here should not interfere with me writing, so of course I am going to keep the blog going!... but then there's the reality of my time being consumed with caring for her and our toddler, and sleeping whenever I can, which has prevented me from posting another entry. Not that I am complaining for one second about caring for my new bundle of joy. In fact, my husband often tells me that I shouldn't hold Ainsley so much because she will get spoiled. If holding her and kissing her will make her spoiled, so be it. I just can't get enough of her!! So, be assured that while I may not be able to write as often as I would like, I am not ending this blog anytime soon.

Rainbows have been on my mind a lot lately, and seemed like a fitting topic for a blog entry. A good friend of mine, Beth, introduced me to the concept of "rainbow babies". For those who don't know, a rainbow baby is a baby who comes into a family following the loss of a baby. I hope she doesn't mind, but I have copied her words from a message she sent me several months ago that perfectly describes this concept. ""Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope." (Thanks again Beth!)

Ainsley is our rainbow baby, and, obviously, since this concept was introduced to me, rainbows have had a whole new meaning.

Just a couple of weeks before Ainsley was born, I took our son, Owen, to the hospital to visit my aunt. While we were walking to her room, we noticed the most amazing double rainbow. It was beautiful. Despite the fact that the definition of a rainbow baby would have referred to Ainsley, seeing this rainbow made me think of Lily. In addition to the rainbows, just being in the hospital made me think of Lily. Being there also made me think of Ainsley's pending arrival and the fact that I would be a patient in labor and delivery for a third time in just a couple of weeks. As I was staring out the window at the two rainbows, I thought of both of my girls.

A couple weeks later, Ainsley was born. We rejoiced when she finally arrived. I couldn't wait to bring her home. The very day that we got home, I noticed that the lilies that we planted in Lily's garden had bloomed for the first time. These gorgeous pink lilies seemed like such an obvious sign to me that Lily was smiling down on us and welcoming Ainsley into our family. I believe that she knows that bringing our little girl home would finally give me a sense of peace and comfort.

As I mentioned in my last entry, Ainsley was diagnosed with ASD, a hole in her heart. Since that entry, she has had some difficulty breathing and has also been diagnosed with VSD, a second hole in her heart. She is being followed by a pediatric cardiologist to monitor it. Upon learning this news, we were devastated. We don't want our little girl to hurt or suffer for even a second. After we finally met with the specialist and had a third echo done, we were told that if these holes do not close on their own, surgery may be required. In Ainsley's case, this would mean open heart surgery to put a patch over the hole. Our family and friends began to pray for our little rainbow baby, and we felt ourselves in the midst of yet another storm.

The day after we met with the specialist, Ainsley's big brother was coloring and drawing with a new pack of markers. He asked if I would help him draw a rainbow. Now, he has no idea that rainbows are of any significance or that they carry any special meaning. While we drew, we talked about the double rainbow that we saw about two months ago, and I thought about all that has happened in the last two months. Drawing rainbows with my son that day reminded me to think only of the calm and the peace that comes after the storm, rather than focusing on the storm itself.

I began writing this entry last week, but didn't get a chance to finish it. Last night, we had dinner with my family, which included my niece, Caroline. You may remember her paper plate picture that I shared in a previous blog entry. Well, I just have to share her artwork once again. I just can't help myself. It is the perfect ending to this entry. Before dinner, Caroline handed me an envelope with Ainsley's name on it written in pink marker, and she simply said "this is for Ainsley". We didn't open it until we got home, but once I saw her drawing, I couldn't contain my smile, and I just had to share it.